The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

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Thursday, January 17, 2013

To Give Or Not To Give…and How Much?

To Give Or Not To Give…and How Much?

JANUARY 15, 2013

by Sasha

If any of us was Bill Gates, we wouldn't ask ourselves whether we
should donate money to ME charities. We'd just do it. We'd reach into
our gigantic bank account and drop our billions on the problem, secure
in the knowledge that we were pouring such shedloads – no, planetloads
– of cash onto it that the problem would be solved.

We're not Bill Gates. So, should we bother giving if we can't give billions?

In his book, 'How to Change the World', John-Paul Flintoff says that
we tend to think that when big things happen, it's because one person
did something big, but in reality, it's usually lots of individuals
making small contributions. It's well worth each of us making even
small donations, because we're among thousands doing the same thing.
It's also important to tell others what we're doing so that they don't
feel like suckers if they give and so that we make donating to our
charities a social norm. By telling people about your giving, you
multiply it.

So if you're not in debt or really struggling to afford the basics, it
would be a good idea to donate. But how much? As people who are
chronically sick, we're probably going to be a bit more cautious with
our money than most but if we pick a strategy that suits us, we'll be
more likely to give and to feel comfortable doing it. And it needn't
be the same strategy forever: pick something that suits you for now,
and if it doesn't later, change it.

Both as a result of the way the church acted regarding my CFS ("just another word for lazy") and because going to church exposed me to germs that required me to take extra days off work (that mindset that it's better to share your flu than miss church), I've left the church.

Instead of tithing to a church, I donate a percentage of the earnings from my editing business to CFS research. The minimum I donate is 10%, but when Simmaron was trying for matching funds, I donated far more than that.

If you can't afford to give anything now, please write it into your Will. It doesn't have to be a huge amount, even selling your bed and clothes at a yard sale will provide a few dollars toward research. Or "in lieu of flowers, donate to [CFS charity of your choice]."

One year, I even tucked envelopes for one of the charities into my Christmas cards urging friends and family to tuck a check in to fund CFS research. (I may do that again this year if I think of it in time to order the envelopes.)